My Lung Journey Years 2016-2020
It's A Love Hate Relationship with Prednison
I started medication for my new lung disease, high dose prednisone (steroid) and immune suppressants. The steroids caused a condition known as “Cushings syndrome” where my face and abdomen become very swollen and bloated. I was barely recognizable. I also developed diabetes and cataracts in both my eyes which had to be surgically removed. Prednisone is an intense drug, not only physically but mentally it gave me a lot of mood swings and depression.
My lungs worsened and I was put on canisters of oxygen to help me breathe at night, but eventually this would become 24/7. At this time I would also start using a wheelchair more to get around as I couldn’t handle the exertion of walking for very long.
As winter approached I continued to have breathing problems. A CT scan of my lungs showed a cavity revealing a fungal lung infection. I would spend the next 6 weeks going to the hospital every day for a 3-6 hour infusion of Amphotercin B. This is a VERY strong anti-fungal medication that is also called by the nick name “ampho- terrible”, because of how harsh the side effects are; extreme headaches, exhaustion… it felt like chemo all over again.
The treatment worked, my infection was gone but more damage was caused to my lungs. A meeting was set up with a Respirologist where I was told to start considering a double-lung transplant. After conferring with doctors and with my family, it was agreed that this would be my next and only step to get better.
I was now starting the work up for lung transplant. After many tests and doctor visits, plus one full month of physical therapy and educational classes, on June 12 I was put on the active lung transplant waitlist! I now had to be within a 4 hours drive of the hospital in case a donor became available. The main criteria for a match is that the donor lungs have the same blood type and height/size. The lungs have to fit into my chest cavity but can be either male or female.
September 15 – I got my call! But sadly it was a “dry run”. This can happen when the donors lungs are removed, inspected and found not suitable for transplant. It happens quite often, and was disappointing but I remained hopeful that my call would come again soon!
For the first time in 3 years I finally got to celebrate Christmas at home! A great milestone to say the least! I must say it was a tough year but I looked forward to getting my lung transplant soon and having my life back together.
Toronto Here We Come
All year I had been considering moving to Toronto after my lung transplant. This is where most of my relatives live and I hadn’t seen them in years. However, the transplant call didn’t seem to be happening so I asked my lung team if it was possible to transfer my care to the Toronto lung program. Both sides agreed. I packed up, had a going away party and on August 5th moved to Toronto, Ontario! After a one month stay at a downtown hotel we found a great apartment and only one block from the hospital.
After doing the required tests and procedures for the Toronto General Hospital lung department, I was put on the active waitlist September 18th! Only on the list for 2 weeks, I was shocked to get a call on October 3rd to come to the hospital as they had found me suitable lungs! But sadly, again, it would be a dry run – aka a false call.
While waiting I continued to do physical therapy 3 times a week and go to my various doctor appointments. I was still using my wheelchair to get around and adjusting to life in the city. My breathing was stable but also limited my activities. I kept hoping my phone would ring with good news.
With Christmas approaching there were many holiday activities going on in Toronto. I saw the Tree Lighting ceremonies at both the Eaton Centre Mall and Dundas Square, went to the Jingle Bell Ball concert, saw the UFC 231 fight and a Toronto Maple Leafs hockey game!
I looked forward to 2019, hopefully getting my lung transplant and starting my new life.
First Day of The Rest of My Life, My Lung Transplant
I invited my cousins over to ring in the New Year and my 22nd birthday.
The first two months of the year I was having chest pain and shortness of breath which caused me to be hospitalized. An x-ray showed I had a pneumomediastinum (air bubble in my lungs). I was also experiencing huge headaches caused by extremely elevated blood gas. My condition makes it hard to blow air out so carbon dioxide then builds up.
When I was in hospital I got my call number 3 on Feb 14! Again, it was determined the lungs weren’t in the right condition to be transplanted.
The next day I was discharged and the day after that on February 17 I got yet another call – number 4! Again, it was a no go.
It’s pretty discouraging when you get a call that doesn’t end up in transplant. But, you just have to tell yourself that those lungs weren’t the right ones, and not let it get you too down.
Then… one more time…. I got called again. Call number 5 on March 29 just before midnight. In I went. After delays and an overnight stay, I received my double lung transplant on March 30, 2019! My surgery started at 4:15pm and finished 10 hours later at 2am on March 31st. The surgery was successful however my heart stopped beating after the removal of my first lung. At that point I was put on ECMO (a machine that acts as a lung to pump and deliver oxygen to the blood). Pacer wires were also put on my heart to keep it beating regularly and were removed the next day. I spent 3 days in the ICU and 2 weeks in the transplant ward of the hospital. During this time I started to lose sensation on the entire right half of my body. It felt very numb and heavy, like a pins and needles sensation when your foot or leg falls asleep. The vision out of the corner of my right eye and partially in my left was reduced and I saw black spotty patches. An MRI revealed I suffered a 2cm blood clot (stroke) on my occipital lobe. This has been quite hard to deal with, but with any big surgery there are always complications. I am alive and very grateful to the skilled surgeons and team at the Toronto General Hospital.
Over the summer I was hospitalized many times for liver, gut and pancreatic problems. Extremely painful bile duct stones were removed on two separate occasions by a procedure called an ERCP. I developed pancreatitis from one of my immune suppressing drugs so we switched to another. In September and October shingles developed on my legs, stomach and back. The blisters are so painful-I had shingles once before and I hope never again.
Currently (May 2020) I am 13 months post transplant. My new lungs have been doing very well! I am awaiting a hip replacement surgery that was canceled in March because of COVID-19. Once I have the surgery I hope to be out of the wheelchair and walking pain free. Years of steroids have taken a toll on my body and weakened my bones. It will be a huge milestone to regain my mobility, exercise my lungs and start to live a whole life again. As I wean down my prednisone I am hoping the Cushing’s syndrome (the reason I have a puffy face and abdomen) I developed will start to subside. Gotta look good for that insta you know!
- Food for Thought
Creating this website has been a very emotional experience. Digging up old photos, diaries, and doctor reports caused me to relive many of my past moments, good and bad. How much I’ve been through, and how young I was during these times, sometimes still shocks me.
My young self always dreamt of being someone unique and accomplished and never wanted to be normal like everybody else. However, with each diagnosis and each year growing more difficult than the rest, normal was all I wanted to be.
Twelve years of cancer treatment, lung transplant, and a stroke has taken an incredible toll on my body and on many days my spirit. On the tough days I would take things minute by minute, hour by hour until I felt better. Trying to focus on the big picture- one where I was healthy and happy once again was always the goal.
Constantly being away for so long for my treatments made it difficult to relate with my old friends. When conversations would circle around people and teachers you don’t know and things you can’t relate to you lose touch. And even when I was home, my activities were limited as I was not physically able to keep up or often anxious about my next treatment or procedure. Sometimes I felt like I was living a double life, doing all I could to hide my true condition from my friends and peers, but not fully able to live in the moment with them, either. I guess what I want people to take away from this is to reach out more to a friend/classmate, neighbor or family member dealing with medical issues or emotional hardships. Don’t assume they have lots of company or support. It could make a world of difference to them and I know I greatly appreciated when someone took the time to ask how I was doing and chat a little bit too. It was a lonely time in many ways having to be away but small gestures can go a long way.
Also worth mentioning is that cancer is not what you see on tv shows and movies. I have seen countless programs portraying “patients” with full heads of hair doing normal activities, joking with goofy nurses and flirting with other cute girl/boy patients. While this may be a reality for a select few, the experience for the most part is nothing like this and it hurts when the media sugercoats it to look more tolerable.
Needing a wheelchair to get around for the past many years I feel more recognition should be given to people with physical disabilities. I constantly see the able- bodied pack into elevators instead of taking an escalator, uneven city sidewalks and doors without wheelchair buttons or buttons that do not work. I want to call on our government to look into helping this often overlooked community. Small changes can make a world of difference.
Little things should never be taken for granted. From the air in your lungs to the loved ones in your home, anything can be taken away in an instant. Even at my lowest points, when I was barely alive and about to receive my bone marrow transplants, I tried not to pity myself because I knew there were so many worse off than me. Many people I met and became friends with passed away and I often wonder how it must have felt for them and their families to wait on test results only to hear things were taking a turn for the worse. I too went through these moments, but lucky, mine were always okay, and allowed me to hold onto hope. So, despite having gone through what I have I always remain grateful. I honour my five friends who never made it.
Today, when people ask me about the future and what I want to do I am caught off guard and unsure what to say. I have been dealing with my health for so long that I haven’t had time to think that far ahead. One thing for sure is I’d like to take a nice long vacation, maybe get back to school and try to live a purposeful life of helping others in any way I can.
Angie Rose Journey Jewelry has given me the opportunity to create a future while honoring my past. The sales of these bracelets will go to the same medical charities that have helped me. The Children’s Make-A-Wish Foundation, St. Jude Children’s Research Hospital, Pink Pearl Foundation, YAC (Young Adults with Cancer), Toronto General Hospital and the Toronto Lung Transplant Civitan Club and so on. Many of the smaller groups need help as they receive no funding.
I feel like I owe something to this universe, as the same kindness has been bestowed on me many times. I was just an eleven year old girl when I got sick, there was no compelling reason to save me. Yet, for some reason, all these doctors and nurses made it their mission to make sure I got a chance to live. That kindness, love and compassion is what I want to give back to the world in some way. I may not be able to cure cancer or save the planet but if I can give someone else the hope they need to make it through their day, it would make all my struggles worthwhile. If I can get through it so can you!
Like my bracelets, life is a journey- smooth, bumpy, twisting and turning, long and short. No matter what shape your journey takes, keep your head held high, your spirit strong and have faith. You are worth saving and you are special. God will help you. You will be okay.
Lastly, thank you to everyone. To every doctor, nurse and specialist who had a hand in getting me better and never giving up on me. And to you, for taking the time to read about my journey.
Of course, the last thanks go to my family. They have sacrificed so much for me, I am forever grateful. I love you.
Procedures and Complications
Acute Lymphoblastic Leukemia
Acute Radiation Sickness
AVN-knees, hips, elbows, fingers, lower back
Allogenic Stem Cell Transplant
Bone Marrow Transplantation
Bone Marrow Aspiration
Biopsy-skin, liver, lungs
Broviac/Hickman central venous line
Bone Density Test
Blood Pressure Test
Blood Gas Tests
Botox Injection- Migraines
Chemo Brain- Post Chemotherapy Cognitive Impairment
C – Continued
C-Difficile Colitis (C-Diff)
Complete Blood Count (CBC)
Computerized Tomography (CT Scan)
Cuvitru-Immune Globulin Subcutaneous Human
Cholecystectomy- gall bladder removal
Cholecystitis- gall bladder inflammation
C-Reactive Protein Test
Deep Vein Thrombosis
Functional Neurological Disorder
Fungal Lung Infection
Gastric Emptying Study
Helicobacter pylori (H-pylori)
Interstitial Lung Disease
I-Vad Central Line
Immunotherapy for Cancer
Ingrown Toenail Removal (‘chemo nails’)
Leukemia- Acute Lymphoblastic Leukemia
Liver Function Tests
MRI-Magnetis Resonance Imaging
MRSA- Methicillin-resistant staphylococcus aureus infection
Neuropathy- hand and foot, peripheral
Pneumothorax- Collapsed lung
PSC-Primary Sclerosing Cholangitis of liver
Pulmonary Function Test
Qt Syndrome- prolonged
T.B. Skin Test
Ultrasound- heart, liver, lung, abdominal, pelivis…
VQ Lung Scan
VRE- Vancomycin-Resistant Enterococci